Saturday, September 24, 2011

Motherhood is a wonderful experience. Regardless of your HIV status, you may want to have children. HIV can be spread to your baby during the pregnancy, while in labor, while giving birth, or by breastfeeding. You will have many choices to make about lowering the risk of passing HIV to your baby.

If you want to become pregnant, talk to your doctor right away. Your doctor can tell you how HIV can affect your health or your unborn baby's health. Your doctor can tell you how to prepare for a healthy pregnancy. There are ways for you to get pregnant that will limit your partner's risk of HIV infection. You can ask your doctor about ways to get pregnant without having unprotected sex with your partner.

If you just found out you are pregnant, see your doctor right away. Find out what you can do to take care of yourself and to give your baby a healthy start to life.

With your doctor's help, you can decide on the best treatment for you and your baby before, during, and after the pregnancy. You should also take these steps before and during your pregnancy to help you and your baby stay healthy.

Take these steps to lower the risk of giving HIV to your baby

Just because you have HIV doesn't mean your child will get HIV. In the United States, before effective treatment was available, about 25 percent of pregnant HIV-positive mothers who didn't breastfeed and did not receive anti-HIV treatment in pregnancy passed the virus to their babies.

Today, the risk of giving HIV to your newborn is below 2 percent. But you and the baby must get the right HIV drugs at the right times. You also can't breastfeed. The steps below can lower the risk of giving HIV to your baby.

Tuesday, September 20, 2011

News that the U.S. government willingly infected Guatemalans with gonorrhea and syphilis without their permission from 1946 to 1948 gives new credence to often dismissed claims by African-Americans and Latinos of government-backed conspiracies to harm them. As ridiculous as many may find such claims, unfortunately, history such as this supports their suspicions. It's very hard not to recall the Tuskegee Syphilis Study, better known as the Tuskegee Experiment.

From 1932 to 1972, physicians from the U.S. Public Health Service recruited 399 black men, the majority of them poor, from the Tuskegee, Alabama area to purportedly provide them with medical care they could not afford. Instead, the many men, who had syphilis, received little care. In fact, the U.S. Public Health Service intended all along to do nothing. The study's purpose was to observe the progression of syphilis, not to treat it. So, for 40 years, government-sanctioned medical professionals sat idly by as scores of black men died from a curable disease.

Reporting on the story on July 26, 1972, the New York Times referred to the Tuskegee Experiment as the "longest running non-therapeutic experiment on human beings in medical history." Because of the Tuskegee Experiment, it has been increasingly difficult for many medical professionals to recruit African-Americans specifically for clinical trials that could help fight key diseases and conditions that affect them.

In August, Doreen Gentzler from NBC's Washington D.C. affiliate helmed a special report about the lack of African-American participants in clinical trials. Noting that only one percent of current clinical trial participants are African-American, in that report, Gentzler and Dr. Monica Swain, who are both white, shared information that highlighted not just the paucity of clinical trial participants but also cited the Tuskegee Syphilis Study as one of the primary reason why.

Statistics cited in a 2009 report on racial differences related to parental distrust of physicians and medical research by the University of Pittsburgh's Dr. Kumaravel Rajakumar "found that 67 percent of African-Americans distrusted the medical establishment compared with 50 percent of white parents." And, interestingly, such distrust was found in all levels of the African-American community, regardless of income.

This level of distrust is obviously not healthy for many reasons. Chief among them is that it hinders the medical community's ability to effectively combat diseases. African-Americans die of many diseases like breast cancer and diabetes at higher rates and, in order to pinpoint why, medical research is a necessary evil. But, as Somnath Saha, M.D., M.P.H., of the Portland VA Medical Center in Portland, has noted, "If we want minority communities to participate in our work, we must first fix the racial and ethnic imbalance that continues to tilt our ivory towers."

Righting those towers with appropriate representation doesn't mean that all will be right in the world. After all, the African-American nurse Eunice Rivers was very much a part of the Tuskegee Experiment. In fact, many of the participants probably participated because of Rivers's involvement so it's deeper than having a few non-white faces. Instead there is a pressing need for black and brown medical professionals who will not just execute experiments that others have decided that are needed. There is a need for medical professionals who will identify conditions and diseases that cannot be ignored and then design ways in which they can be addressed.

The road to creating African-American trust in particular in medical institutions, especially government-backed ones, will be hard. Even now, it is not uncommon to hear African-Americans assert that HIV/AIDS is indeed a man-made disease that was purposely put into the black community. While these claims seem ridiculous to other Americans, African-Americans know of other "ridiculous" situations that have turned out to be horrifically true.

With former President Bill Clinton issuing a formal apology from the federal government for the Tuskegee Syphilis Study in 1997, not to mention the congressional reforms introduced in the 1970s, along with Secretary of State Clinton standing up strongly today in the wake of this Guatemalan discovery, Washington certainly has a new attitude. Consistent and caring outreach from the government and the medical community as a whole will continue to create goodwill and, in time, save more lives.

Bayer Sells AIDS-Infected Drug Banned in U.S. in Europe, Asia - Unearthed documents show that the drug company Bayer sold millions of dollars worth of an injectable blood-clotting medicine -- Factor VIII concentrate, intended for hemophiliacs -- to Asian, Latin American, and some European countries in the mid-1980s, although they knew that it was tainted with AIDS. Bayer knew about the fact that the drug was tainted and told the FDA to keep things under wraps while they made a profit off of a drug that infected its patients. If these allegations are true, then both Bayer and the FDA are at fault for this catastrophe. FDA regulators helped to keep the continued sales hidden, asking the company that the problem be ''quietly solved without alerting the Congress, the medical community and the public,'' according to the minutes of a 1985 meeting

Sunday, September 11, 2011

Those who follow this blog know I’ve been working on a presentation about children living with HIV/AIDS. Some people ask why, and I tell them I was never that interested in HIV/AIDS until I went to Cambodia and got to know children living with the virus . They are alive because they have access to generic (cheap) antiretroviral drugs. It’s not clear how long they can live this way. People say “indefinately,” because they don’t know. “Indefinately” may or may not mean a long life, but the kids I’ve met can teach us all something about living a full life today.

I was thinking of the girl in the photos above when I wrote this poem (To love a child with AIDS). She’s a precious child living with HIV — I hope she has a long and full life ahead of her.

Monday, September 5, 2011

Maria is a tall, slim woman with sharp features and an easy smile. You’d never guess her story. She now has one child, though she used to have two. Her 18-month baby died of meningitis two years ago. He had AIDS.

Maria is HIV positive. Infected by her husband, she left him shortly after, but didn’t know her baby was also infected. Throughout the pregnancy, the doctors said the baby could not contract the virus from her but they didn’t test the baby when he was born.

Then, one Christmas, Maria got the shock of her life. Her son was sick and she took him to the hospital. They found a cyst in his stomach and operated right away. Tests on the cyst showed that it was not malignant, but that he had HIV.

The doctors sent Maria and her baby home immediately. "Go home and die," they said. So she went home. Through her husband in the United States, Maria received some medication eventually - AZT for herself and the baby. For the baby it was a case of too little too late.

After his death, Maria took to her room, convinced that she was going to die next. But a phone call from Peggy McEvoy [former Regional Director of UNAIDS] helped. McEvoy, who Maria affectionately calls Mother, encouraged her to form a network to help others in her country. Maria trained as a counsellor, made contact with other HIV positive people and visited health centres and hospitals to help those newly diagnosed. They now have a network of people living with HIV that provides support, help and counselling.

Dieula Jean, Haiti

Dieula Jean, 30 years old, is a mother of four children, including an infant who was born infected. When she tested seropositive in April 1999, she had lived with her husband for 12 years, had never had a relationship with another man other than the father of her children, who had never shown any sign of infidelity. Needless to say she was surprised.

"When I was pregnant with my last baby, I suffered all the time. I never had any problems during my first three pregnancies. To my surprise, I started getting pains and wounds all over my body and venereal infections. When the doctor told me the news, I could not speak nor raise my legs, let alone walk. I felt cold and hot at the same time.

"Then, slowly I started thinking about my children, especially about my baby. I asked myself, "What is happening to me? What will I tell my husband who doesn’t want to hear anything about AIDS?" Many questions came to my mind. Finally, I resigned myself. …I have decided to suffer with serenity."

"Currently," she said, "the illness is eating me away. I cannot obtain the medicines that can reduce the suffering. My only wish is that infected people like myself and many other uninfected people, support me morally."

Dieula admitted that her husband, although always suffering from stomach aches, refuses to get tested and prefers to leave the house to avoid hearing about AIDS.

Michelle, Jamaica

In 1992, Michelle met an American tourist in Runaway Bay. "He was going through a divorce, we started corresponding and eventually we got close. He would come every summer, every Christmas until finally, he said, ’Michelle, I am coming to Jamaica and I want us to get married.’ Of course I was very happy about that. I never used to think about HIV and AIDS at the time because as far as I was concerned, it was a careless disease and I was not a careless girl, and it was a homosexual thing."

They got married and he returned to the United States where he filed for her to join him. She got her papers, did her medical and went to the Embassy for an interview.

"They [Embassy officials] said I needed to go back to where I did the blood test and find out what was wrong. At that time, I knew I was anaemic, so I was thinking well that was the problem."

But it wasn’t. She was invited to come and see the doctor. The doctor’s choice of words was less than tactful. "Michelle, you have what Magic Johnson has and you are going to die."

Samantha, Trinidad and Tobago

Samantha was diagnosed with HIV at age 17. After completing junior secondary school in 1996, she left her mother’s home to go and live with her father. That did not work out and soon she was on the street with nowhere to go but to her boyfriend.

He was her third sexual encounter, but "I didn’t know anything about sex," she said. "The first two was nothing - just a one-time thing." The third time turned into her first real relationship.

She stayed with her boyfriend for two years and got pregnant at age 16. But she knew that all was not well. Her boyfriend was getting ill too often, having night sweats, "trouble" with his glands and ague. Samantha began to question why they were always having sex in the dark.

Then his mother, sister and cousin died of AIDS in a short time. Samantha ran straight to the doctor, who found she had genital warts and recommended an HIV test. By then Samantha had already given birth to a baby girl. She didn’t get tested until 1998.

After testing positive, Samantha felt as though she was going out of her mind. She became depressed and eventually withdrew completely. Finally, she joined a support group for people living with HIV/AIDS and started to learn how to live. Luckily, her daughter tested negative and now lives at a home for children.

Samantha left her boyfriend and has made a life for herself. She built a three-room house with money she got from working in a restaurant and from her boyfriend. She successfully completed a computer literacy course and plans to become a counsellor."

"To me, HIV is like a test," she said. "People starting to live longer with HIV, you just have to love yourself and be happy."

THEORIES THAT AIDS IS A GOVERNMENT CONSPIRACY TO DESTROY UNDESIRABLE POPULATIONS MAY MAKE POLITICAL SENSE, BUT ARE THEY SUPPORTED BY FACTS?
AIDS has an uncanny knack for attacking people the dominant society considers "undesirables": gays, injection drug users (IDUs), prisoners, and people of color. The commonly cited US statistic that African Americans have twice the AIDS rate as white Americans understates the problem because it is based on the total number of cases since 1981. While white gay men constituted the large majority of cases in the early days, by the early 1990s the rate of new cases among Latinos was 2.5 times higher than among whites, and the black/ white ratio was even starker at 5-1 for men and 15-1 for women. By 1993, AIDS had become the leading cause of death among African Americans between the ages of 25 and 44. Internationally, the racial disparity is even worse: About 80 percent of the world's 9 million AIDS deaths through 1995 have occurred in Africa, where 2 million children have already been orphaned.

AN ALMOST PERFECT FIT

The correlation between AIDS and social and economic oppression is clear and powerful. What is more, the pattern meshes neatly with an extensive history of chemical and biological warfare (CBW) and medical experiments which have targeted people of color, Third World populations, prisoners, and other unsuspecting individuals. In the first North American example of CBW, early European settlers used smallpox infected blankets as a weapon of genocide against Native Americans. A few centuries later, the US Army conducted hundreds of tests that released "harmless" bacteria, viruses, and other agents in populated areas; one was to determine how a fungal agent thought mainly to affect black people would spread. Washington also subsidized the pre marketing tests of birth control pills before a safe dosage was determined on Puerto Rican and Haitian women who were not warned of the potentially severe side effects. Since the 1940s, the US has conducted 154 tests on 9,000 people, soldiers, mental patients, prisoners many of whom had no idea of the risks involved. On another level, the drug plague in the ghettos and barrios whether by intent or not has the effect of chemical warfare against these communities.

The most apposite example is the four decade long Tuskegee syphilis study. Starting in 1932, under US Public Health Service auspices, about 400 black men in rural Alabama were subjects in an experiment on the effects of untreated syphilis. They were never told the nature of their condition or that they could infect their wives and children. Although penicillin, which became available in the 1940s, was the standard of treatment for syphilis by 1951, researchers not only withheld treatment but forbade the men from seeking help elsewhere. This shameful "experiment" was stopped in 1972, only after a federal health worker who was involved blew the whistle. Nor is experimentation on people of color a thing of the past. Beginning in 1989, 1,500 children in West and East Los Angeles and Inglewood were given an experimental measles vaccine as part of a government sponsored trial. Most of the subjects were Latino or African American. The parents of these children were never told that they were part of an experiment with an unlicensed drug, and thus had a less than adequate basis for giving their consent. The Edmonston-Zagreb, or E-Z vaccine was also tested in Senegal and Guinea-Bissau and Haiti, Guinea, and more than a dozen other Third World countries. Trials in Los Angeles conducted with the cooperation of Kaiser Permanente, the Centers for Disease Control (CDC) and John Hopkins University, were stopped two years later after questions were raised about the vaccine's relationship to an increased death rate among female infants. When use of the experimental drug came to light, CDC Director Dr. David Satcher noted, "A mistake was made. It shocked me. ... But things sometimes fall through the cracks." Dr. Stephen Hadler, director of the epidemiology and surveillance division of the CDC's national immunization program, said that although researchers have not confirmed a causal association between the more potent dose of E-Z vaccine and the deaths, "it was enough to make the World Health Organization say that "high doses of the vaccine should no longer be considered for use in kids." It should be emphasized, he told the Los Angeles Times, that the deaths occurred among children living in poor countries, many of whom were malnourished and did not have access to adequate health care. Hadler did not, however, emphasize that those same conditions are all too common in the US. In light of this gruesome pattern and pervasive evidence in every corner of society that the lives of blacks are less valued, there are good reasons why so many prisoners as well as a significant portion of the African American community believe that government scientists deliberately created AIDS as a tool of genocide.

Dangerous To Your Health

There is only one problem with this almost perfect fit: It is not true. The theories on how HIV the virus that causes AIDS was purposely spliced together in a lab wilt under scientific scrutiny. Moreover, these conspiracy theories divert energy from the work that must be done in the trenches if marginalized communities are to survive this epidemic: grassroots education, mobilizations for AIDS prevention, and better care for people living with HIV. They distract from the urgent need to focus a spotlight on the life-and-death issue of AIDS prevention and on the crucial struggle against a racist and profit driven public health system that is responsible for tens of thousands of unnecessary deaths. After more than nine years doing AIDS education in prison, I have found these conspiracy myths to be the main internal obstacle in terms of prisoners' consciousness to implementing risk reduction strategies. A recent study at the University of North Carolina, Chapel Hill, confirmed that African Americans who believe in the conspiracy theories are significantly less likely to use condoms or to be tested for HIV. Put bluntly: The false conspiracy theories are themselves a contributing factor to the terrible toll of unnecessary AIDS deaths. What's the use, believers ask, of making all the hard choices to avoid spreading or contracting the disease if the government is going to find a way to infect people anyway? And what's the point of all the hassles of safer sex, or all the inconvenience of not sharing needles if HIV can be spread, as many conspiracy theorists claim, by casual contact such as sneezing or handling dishes? The core of the mind-set that undermines prevention efforts is "denial." People whose activities have put them at risk of HIV are often petrified and turn to conspiracy theories as a hip and seemingly militant rationale for not confronting their own dangerous practices. At the same time, such theories provide an apparently simple and satisfying alternative to the complex challenge of dealing with the myriad of social, behavioral, and medical factors that propel the epidemic. While convinced that humans did not design HIV, my main concern here is not to disprove the conspiracy theories. Neither do I attempt to solve the problem of the origins of AIDS or even review the many different theories and approaches to that question. The origin of this disease, as of many others, is likely to remain unsolved for years to come. Rather, the article examines the validity of one set of theories being widely propagated to prisoners and to African American communities: that HIV was deliberately spliced together in a lab as a weapon of genocide. What follows is a look at the major flaws in, and political agenda of, the major conspiracy theories. Readers uninterested in this detailed critique may skip to the section beginning with "The Real Genocide," which discusses the system that made these theories so plausible and that abets as part of its routine functioning the spread of AIDS to "undesirable" communities.

SCIENTIFIC UNRAVELING

An early version of the AIDS-as-biowarfare theory was based on the work of two East German scientists, Jakob and Lilli Segal, published by the Soviet news agency Tass on March 30, 1987. The Segals claimed that HIV could not have evolved naturally, being in fact an artificial splice between visna virus (a retrovirus that infects the nervous system of sheep) and HTLV-1 (the first retrovirus known to infect humans). This splice, they asserted, was created at the notorious CBW lab at Fort Detrick, Maryland, and then tested on prisoners in the area. Finding the article politically credible, I sent it to Janet Stavnezer, a friend and long-time supporter of the civil rights and anti-war movements, who is a professor of molecular genetics and microbiology specializing in immunology. Her response was unequivocal: The Segals' splice theory is scientifically impossible. A few years later, as perestroika spread, the Soviet Union withdrew these charges whether out of good science or good diplomacy is unknown. In any case, by then, even non-scientists had noted flaws. For example, there was an obvious error of US geography. The Segals had speculated that the Maryland prisoners, once released congregated in New York City, which then became the seedbed of the epidemic. But most Maryland prisoners would have returned to Baltimore, or Washington, DC neither of which was an early center of AIDS. Since the Segals, there have been a number of related theories that HIV was artificially created by splicing two existing viruses. One, set at Fort Detrick, puts the date back to 1967; another implicates the World Health Organization (WHO), starting in 1972. Stavnezer and Mulder debunk these theories by showing that none of the viruses posited in the various splice theories has nearly enough genetic similarity (homology) with HIV to be one of its parents. Investigative journalist Bob Lederer conducted a separate inquiry into AIDS conspiracy theories for Covert Action Information Bulletin in 1987. One of his prime sources, Dr. David Dubnau, a long- time activist against CBW, was emphatic: The HIV splice theorists "are simply wrong," he said, and offered the same explanation as Stavnezer and Mulder. Lederer had written in the 1987 article that the various non splice theories of dissemination were plausible. Recently, in light of current knowledge, he has revised his conclusion and determined that "None of the AIDS as CBW theories [including the non splice theories] really holds up." Needing a vehicle for the deliberate dissemination of the allegedly spliced virus, the conspiracy theorists also characterize vaccination programs (against smallpox in Africa, hepatitis-B among gay men in the US, and polio in various places) as examples of a CBW campaign. While vaccination programs with inadequate controls for contamination may have contributed to the spread of the infection, they could not have been a prime cause: The geography of the vaccination campaigns does not correspond with the locations of early centers of AIDS. Meanwhile such unsubstantiated rumors can dangerously discourage people here and in the Third World from getting the same protection for their children that have done so much to stop diseases for more privileged whites.

There is another telling problem with the theories: timing. HIV almost certainly arose well before scientists had any reason to consider retroviruses as possible CBW agents to destroy the human immune system. The first human retrovirus (HTLV-1) was not discovered until 1977, and could not immediately be linked to any disease. Through the end of the 1970s the search for human retroviruses was propelled by speculation that they might cause cancer, not that they would target the immune system. Since the epidemiological evidence shows AIDS in several countries in 1978, HIV (a virus with a long incubation period), had to exist at least a few years before that. And it is probably considerably older. Retrospective tests on 1,129 blood samples taken in 1971-72 from US injection drug users found that 14 were HIV positive. There are also cases of patients who died of AIDS defining illnesses decades ago: a teenager in St. Louis in 1968, a sailor in England in 1959, and a Norwegian sailor, his wife and child in the late 1960s. Preserved tissue and blood samples from all of these cases later tested positive for HIV antibodies, although the more difficult direct tests failed to find the virus itself. Medical case histories going back to the 1930s the earliest period in which accurate records were kept show isolated cases with all the earmarks of AIDS. Various analyses of the DNA sequences a technique used for broad assessment of a specie's age have provided estimates for the age of HIV that range from 30-900 years. In brief, the lack of knowledge of any human retroviruses before the late 1970s and the compelling evidence for the earlier genesis of HIV virtually eliminate the possibility that scientists deliberately designed such a germ to destroy the human immune system. More specifically, and decisively, Stavnezer and Dubnau independently confirm that all the alleged splices are in fact impossible because HIV does not have nearly enough genetic similarity to any of the proposed parent viruses.

SHYSTER SCIENCE

The most common source of the conspiracy theories circulating in New York State prisons is William Campbell Douglass, M.D.15 His article "WHO Murdered Africa, "(referring to the World Health Organization), and his book AIDS: The End of Civilization, are prime sources for many black community militants and prisoners who embrace the conspiracy theory out of a sincere desire to fight genocide. But Douglass, who is white, expresses little concern for black lives. He instead states his purpose as being the defense of Western civilization, and describes his politics as "conservative" which turns out to be quite an understatement for his ultra right wing political agenda. Douglas taps into the font of mistrust created by the arrogance and glibness of establishment science. Quick acceptance of the still unproven African green monkey theory was especially suspect and led many people to react against the presumptions of mainstream medicine. Douglass' alternative, however, is a bizarre cocktail of half truths, distortions, and lies. He fails to recognize a basic distinction in epidemiology between the cause of AIDS (a virus) and a means of transmission (dirty needles) (p. 171). He evidently thinks that all RNA viruses are retroviruses (p.230) which is like thinking that all fruits are citrus. And his pronouncements on the possibility of transmission by insects display fundamental ignorance of the science involved. There is also something radically wrong with his statistics; he offers five different figures for the number of HIV infected people in the US (pp. 53, 60, 63, 168, 170) without trying to reconcile the variations. He also" proves" that HIV is a splice of two other viruses by comparing shapes as depicted in his own crude sketches (p. 231), when the scientific method for determining the degree of relatedness of different viruses is to make a detailed
comparison of the sequence of the base pairs of nucleic acid in the DNA. Such an analysis disproves the splice theory.

FRAUDULENT "SCIENCE"

Douglass goes beyond mere distortion when he reaches the core of his conspiracy. His "smoking gun" is an article from the Bulletin of the World Health Organization. In a blatant distortion of the 1972 article, Douglass claims that the World Health Organization called for the engineering of a retrovirus to cause AIDS. He is unequivocal: WHO is talking about "retro viruses" and is asking scientists to "attempt to make a hybrid virus that would be deadly to humans. ...That's AIDS. What the WHO is saying in plain English is Let's cook up a virus that selectively destroys the T-cell system of man, an acquired immune deficiency.' " (Emphasis in original.) He presents an almost identical description in his book. (p. 80) Aside from the unlikelihood of conspirators' publishing their evil plans, Douglass' characterization borders on fraud. The WHO article in question is not primarily about retroviruses; it is not at all about engineering new viruses; it never discusses making hybrids; and it is absolutely not about making a virus to destroy the human immune system. Anyone who takes the time to look at the original will find that it details a number of existing viruses that cause various illnesses in humans and other mammals. Evidence was emerging by 1972 that some of these viruses, in addition to their direct damage, impacted the immune system. The only call the article makes is to study these secondary effects. He offers only one quote from the original. Not only does he change the context, he omits the list of viruses under study. All the listed viruses were related to already recognized illnesses; most are not retroviruses; none is a retrovirus that affects humans; and none is a suspect in any of the proposed scenarios for HIV splicing. Douglass has created a bogeyman out of thin air.

DEADLY LIES

Douglass' disinformation becomes a deadly threat when he discredits the very prevention measures needed to save lives: "It is possible, " he wrote, "that even the government propaganda concerning intravenous drug use is a red herring. If the intravenous route is the easiest way to catch AIDS, why does it take as long as five to seven years for some recipients of contaminated blood to come down with AIDS?" (p. 171) Here, he seems to forget the well established incubation period between infection with HIV and onset of AIDS, although he manages to remember it later when he refers to a "latency" period of 10 years. (p. 245) And arguing that there isn't a perfect correlation between the number of acts of intercourse and infection, he declares "AIDS is not a sexually transmitted disease. "(p. 243) Then, after sabotaging prevention efforts by disparaging the well established danger of needle sharing and unprotected sex, Douglass fuels hysteria with claims that AIDS can be contracted by casual contact. "The common cold is a virus," he says in his article. "Have you ever had a cold? How did you catch it?" By failing to differentiate between airborne and blood borne viruses, he is conjuring up a scare tactic as scientific as warning that your hand will be chopped off if you put it in a goldfish bowl because, after all, a shark is a fish. He also asserts, citing no evidence, that "the AIDS virus can live for as long as 10 days on a dry plate," and then asks, "so, are you worried about your salad in a restaurant that employs homosexuals?" People are understandably skeptical of government reassurances on any matter. But we can turn instead to the experiences of families of people with AIDS and of grassroots AIDS activists: There are hundreds of thousands of us who have worked closely with infected people for years without catching the virus. The unwarranted fears about casual contact deter sorely needed support for our brothers and sisters living with HIV infection and divert attention from the most common means of transmission: unprotected sex and shared drug injection equipment.

REACTIONARY POLITICS

Despite the apparent irrationality, there is a coherence to Douglass' distortions and fabrications. They are driven by an ultra-right-wing political agenda that goes back to the 1960s, when he was a member of the John Birch Society and ran a phone line spouting 90 second "patriotic message." In it, Douglass railed against the civil right movement and denounced the National Council of Churches and three presidents as part of a "Communist conspiracy." Among the nuggets he offered callers in at least 30 US cities was the likelihood "that those three civil rights workers [presumably Schwerner, Chaney, and Goodman] in Mississippi were kidnaped and murdered by their own kind to drum up sympathy for their cause." In another message he predicted that "The Civil Rights Act will turn America into a Fascist state practically overnight." Two decades later he was blaming gays for AIDS in The Spotlight, the organ of the ultra-right-wing Liberty Lobby, for which he wrote regularly and in which he ran advertisements for "The Douglass Protocol," his cure all medical clinics. In 1987, he wrote, "some have suggested that the FDA is waiting for the majority of the homosexuals to die off before releasing ribavirin," a drug he was at the time promoting as a miracle cure for AIDS. Douglass, however, opposed withholding a "suppressed" cure "although I feel very resentful of the homosexuals because of the holocaust they have brought on us." Later Douglass began promoting a strange cure all treatment (pp. 251-52), photoluminescence, in which small amounts of blood are drawn, irradiated with ultraviolet light, and reinjected. Treatments at his Clayton, Georgia, clinic can span several weeks and cost thousands of dollars. By 1992, when he wrote AIDS: End of Civilization, hes aw AIDS as part of the "entire mosaic of the current attack against western civilization" (p. 14); the term "western" being a thinly veiled code word for "white." He had also shifted blame from homosexuals to communists, and portrayed AIDS as a diabolical plot perpetrated by WHO, which "is run by the Soviets." (p. 118) In these later writings, Douglass weaves an elaborate and intricate plot describing how the communists much like an invading virus took over the machinery of the US Army's CBW labs at Ft. Detrick and the US National Institutes of Health in order to use them to create and propagate HIV.
Douglass is so mired in anti communism that he fails to revise this scenario for his 1992 edition after the collapse of the Soviet Union. He even charges that a Russian, Dr. Sergei Litivinov, headed WHO's AIDS control program in the late 1980s, when, in fact, it was led by an American, Jonathan Mann, whose writings Douglass cites favorably on a number of occasions. In the guise of a program against AIDS, Douglass proposes a basket full of policies favored by the ultra right and neo-Nazis: support and strengthen the powers of local law enforcement (p. 139); make preemptive military strikes against Russia (p. 138); abolish the UN and WHO (p.120); and stop all illegal Mexican immigration into the US (p. 253). Then there are his more specific proposals: mandatory testing for HIV (p. 66); quarantine of all those with HIV (pp. 165-66); removal of HIV infected children from school (p. 161); and incarceration, castration, and execution to stop prostitution. (p. 158) He argues that if we don't overcome a tradition "where civil rights are more revered than civil responsibility," hundreds of millions will die. (p. 165) While such proposals may further the right's law-and-order agenda, a wealth of public health and activist experience has shown that such repressive measures are counterproductive. Discrimination and repression drive those with HIV and its high risk activities underground, making people unreachable for prevention, contact notification, and care. And here is the final appeal in his book: "[I]t appears that regulation of social behavior, as much as we hate it in an egalitarian society such as ours, may be necessary for the survival of civilization." (p. 256)

SIGN OF THE TIMES

As bizarre, self contradictory, and refutable as his pronouncements are, Douglass is not an isolated crackpot. A fellow conspiracy theorist with whom he shares much common ground is Lyndon LaRouche, a notorious neo-fascist with documented links to US intelligence agencies. LaRouche's "National Democratic Party Committee" organized the intensely homophobic campaign in 1986 for California's Proposition 64, which, had it not been rejected by voters, would have mandated an AIDS quarantine. In 1989, Douglass and many key LaRouchites spoke at a conference which focused on various conspiracy theories for the origin of AIDS. The "scientific" source that the LaRouchites used for their reactionary campaign is Robert Strecker, M.D., who also addressed the conference Douglass has worked closely with Strecker, considers him a mentor, and dedicates AIDS: The End of Civilization to him. Michael Novick reported in White Lies/White Power that within the far right, it is "The LaRouche groups that are particularly dangerous because, despite their fascist orientation, they have been attempting to recruit from black groups for some time." The political analysis of Bo Gritz, head of the "Populist Party" is another source for AIDS conspiracy theorists. As Novick's book shows, the "Populists" use anti business rhetoric to try to recruit among the left, but the organization has deep roots in the ku klux klan and strong ties to the extreme white supremacist christian identity. When such forces propagate AIDS conspiracy theories among African Americans, one result is to divert people from the grassroots mobilization around prevention and education that could foster greater cohesion, initiative, and strength within the black community. At the same time, the right fans the flames of homophobia which combines with the problem of racism within the predominately white gay and lesbian movement to undermine a potentially powerful alliance of the communities most devastated by government negligence and inaction on AIDS. We live in a strange and dangerous period when the attractive mantle of "militant anti-government movement" has been bestowed on ultra-right-wing, white supremacist groups. The main reason they can get away with such a farce is that their big brother the police state did such an effective job in the blood- soaked repression of opposition groups such as the Black Panthers, which was rooted in the needs and aspirations of oppressed people. With people's movements silenced, the right has co-opted the critique of big government and big business to achieve new credibility. The seedbed of discontent comes from the erosion of the previous guarantee of economic security and relative privileges for a wide range of white people in the middle and working classes. The right, however, portrays the threat as coming from the inroads made by women, immigrants and people of color. Thus their vehemence and militancy spring from the same legacy of white supremacy and violence that is the basis of the government they criticize and their program is in essence a call to return to the pioneer days' ethos that any white male had the right to lay a violent claim to Native American land, African American labor, and female subservience. Whatever the right's motives, the practical consequences are clear: There is a definite correlation between believing these myths and a failure to take proven, life saving preventive measures. In the end, the lies promulgated by the likes of Douglass, Strecker, and LaRouche kill.

THE REAL GENOCIDE

The New York Times, in an editorial expressing alarm that an "astonishing" number of African Americans believe in conspiracies with AIDS as a prime example could only understand the phenomenon as "paranoia." Educated white folks, to the degree they are aware of such matters, tend to be "amazed" by such beliefs. But what is truly amazing is that so many whites are so out of touch with the systematic attack by the government-medical-media establishment on the health and lives of African Americans. The stone wall of calculated ignorance and denial that blacks face every day is a fine surface on which to write conspiracies, and may explain why some people become vested in a plot scenario that seems to crystallize the damage. But the problem is far more powerful and pervasive than any narrow conspiracy theory can capture. And although the health horror this society imposes on African Americans is not a "mainstream" public issue, black people know what they are experiencing. They also know that the radical gap between the life expectancy of African Americans and that of white Americans was there even before AIDS burst onto the scene. A 1980 Health and Human Services Department report showed that there were 60,000 "excess deaths" among blacks. This is the number of black people who would not have died that year if blacks had the same mortality rate as whites. That figure marks more unnecessary deaths in one year alone than the total number of US troops killed during the entire Vietnam War. The black body count is a direct result of overwhelming black/white differences in living conditions, public health resources, and medical care. The infant mortality rate a good indication of basic nutrition and health care is more than twice as high among black babies as among whites, while black women die in childbirth at three times the rate of whites. There are also major differences in prevention, detection, treatment, and mortality for a host of other illnesses, such as high blood pressure, pneumonia, appendicitis and cancer. Comparisons are even starker when class as well as race is factored, and, of course, the health status of both Latinos and poor whites is worse than that of more affluent whites. The situation has worsened since 1980 with the advent of AIDS and the new wave of tuberculosis. TB, long considered under control in the US, began a resurgence in 1985. One big factor was the greater susceptibility of HIV infected people to TB. But TB is an important example for another reason: It has always been closely linked to poverty. Crowded tenements, homeless shelters, jails, inadequate ventilation, and poor nutrition all facilitate the spread of this serious disease. Given the distribution of wealth and privilege, it is not surprising that the rate of TB for black Americans is twice that for white Americans, African Americans are also assailed by a range of problems such as high stress, poor nutrition, and environmental hazards. One significant example of environmental hazards is the excessive blood levels of lead in children a condition with proven links to lowered academic performance and to behavioral disorders. In 1991, 21 percent of black American children had harmful quantities of lead in their blood, compared with 8.9 percent of all US children. In addition to disease, the high rate of black-on-black homicide a secondary but particularly painful source of needless deaths is in its own way a corollary of the frustration and misdirected anger bred by oppression.

STDS AND DRUGS

The evidence is clear that far from being a mysterious new development, AIDS and other epidemics and health hazards flow most easily along the contours of social oppression. There are two particular ways in which the racist structure of US society fosters the spread of HIV: The public health system fails to stem the spread of sexually transmitted diseases (STDs); and the legal system seeks only to punish drug abusers rather than treat them or ameliorate the underlying social and economic causes. A major risk factor for HIV transmission is untreated STDs. These infections can concentrate HIV laden white blood cells in the genital tract and can also cause genital sores, which are easier points of entry for HIV. Although STDs can be readily contained by responsible public health programs, rates began to soar for blacks in the mid-1980s, with, for example, a doubling of syphilis for Blacks from 1985 to 1990. At the same time, rates have remained stable for whites. This grave racial difference probably results from the lack of adequate STD clinics and the failings of public health education, along with the more general breakdown in social cohesion and values that can affect communities under intense stress. Drugs, along with the violence and police repression that accompany them, constitute a plague in their own right for the ghettos and barrios. However, the public perception that illicit drug use is more prevalent among non whites is wrong. Household surveys conducted by the National Institute of Drug Abuse show that African Americans, 12 percent of the US population, comprise 13 percent of illicit drug users. Where there is a tremendous difference, though, is in incarceration. Seventy four percent of the people in prison for drug possession are African American. There is also a major racial disparity in terms of drug related infection by HIV. While partially a result of which drugs are used and how they are used, there is certainly a big and deadly difference in access to new (sterile) needles and syringes through either pharmacies or personal networks. Also, on the street, the police are much more likely to stop and search Blacks and Latinos. This practice deters injection drug users of color from carrying personal sets of works (in states where they are illegal) and pushes them instead to share needles at shooting galleries.

CRIMINAL NEGLIGENCE

The latest example of the public health failing concerning AIDS is hardly known beyond the immediate circles of AIDS workers. Studies completed in 1993 showed that the previously recommended and widely disseminated protocol for cleaning needles with bleach does not work. Yet there has been no wide scale effort to sound the urgently needed alarm about this grave danger. The literature since 1993 has delineated a new, more effective bleach method that entails using 100 percent undiluted bleach (as opposed to a 10 percent solution) and holding the bleach or rinse water in the needle and syringe, while shaking and tapping, for a full 30 seconds for each step of the nine step process. However, most IDUs do not even look at new handouts because they believe they already "know" the bleach method. In addition, public health authorities have taken no responsibility for the type of training it takes to get an IDU, anxious to get high, to properly complete such a complex and time consuming process. One reason the authorities haven't trumpeted warnings about the problems with bleach may have more to do with politics than public health: The assumption that there is an easy method of bleach sterilization serves as a buffer against pressure to implement sorely needed needle exchange programs. There is impressive evidence that these programs, which allow IDUs to obtain new, sterile needles and syringes, are highly effective in reducing HIV transmission, while there is no evidence that they lead to any increase in drug use. Needle exchange programs could even serve as an outreach and contact point for reducing drug use if "anti drug" politicians allocated funds for treatment instead of incarceration. Despite the clear public health evidence, many politicians have opposed needle exchange programs out of fear of being labeled "soft on drugs." Meanwhile, the rate of HIV among IDUs in states where needle are proscribed is five times higher than in states where they are legal. Tens of thousands of IDUs their lovers, and their children have been condemned to die because health agencies won't advertise their mistakes and because politicians posture for political advantage by banning the use of federal AIDS funds for needle exchange programs. Shared needles is just one area of potential risk reduction. For overall prevention to work, the most effective and documented method of sharply reducing HIV transmission in peer education. Homeboys and home girls with appropriate training in HIV/AIDS information speak the same language, live in the same situations, and can work with the people in their communities in the consistent, caring way needed to change risky behaviors. Meanwhile, prisons provide fertile ground for peer education. They have some of the highest HIV rates in the US, and people who might have been constantly on the move in the street are now stationary and congregated. The vast majority of prisoners eventually return to their outside communities where they can spread either AIDS awareness or AIDS. But prison administrations have generally been hostile to peer led HIV/AIDS education; only a pitiful handful of such programs exist, and those are often hamstrung by bureaucratic restrictions. Allowing misinformation about cleaning needles to persist, blocking needle exchange programs, failing to treat STDs, and thwarting prison peer programs are major examples of the continuing official criminal negligence with regard to AIDS and in particular, how this plague has been allowed to explode in the ghettos and barrios.

FIGHT THE POWER
Waiting for the government to act is suicidal. The peer education model shows that when we take responsibility for ourselves, our families, and our communities, we can make a big difference. Through grassroots organizing communities can ally to demand social use of social resources instead of allowing tax dollars to go to massive military budgets and corporate welfare schemes. What we don't need are the fundamentally right wing conspiracy theories of Dr. Douglass and the like that lead us on a wild goose chase for the little men in white coats in a secret lab. The false information they purvey that HIV is spread by casual contact but not by sex and drugs generates cruelty toward people with AIDS and fosters support for a police state. In a bitter twist, these conspiracy theories divert people from identifying and fighting back against the real genocide. While US government plots such as the secret radiation and Tuskegee experiments do in fact exist the damage they've done is small compared to the high human costs of the everyday functioning of a two tiered public health system that is rooted in racism, sexism, and profiteering. Overall, the living conditions of people of color in the US are a concatenation of epidemics that cascade through the ghettos and barrios: AIDS-TB-STDs; unemployment, deteriorating schools, homelessness; drugs, internal violence, police brutality, wholesale incarcerations; violence against women, teen pregnancies, declining support structures for the raising of children; and environmental hazards. These mutually reinforcing crises flow from decisions made by government and business on social priorities and the allocation of economic resources. Government policies that have such a disparate impact on survival according to race can be defined as genocide under international law. Whatever term is used, the cruelty of tens of thousands of preventable deaths is unconscionable. This reality is the basis for the scream of a people that "mainstream" society seems unable or unwilling to hear. These conditions are the real genocide in progress that must be confronted.

Like most medicines, antiretroviral drugs can cause side effects. These unwanted effects are often mild, but sometimes they are more serious and can have a major impact on health or quality of life. On rare occasions, side effects can be life threatening.

Once started, antiretroviral treatment must be taken every day for life. Every missed dose increases the risk that the drugs will stop working. It is therefore vital that people receiving antiretroviral treatment get all the help they need to minimise the impact of side effects. Often there are several ways to lessen the harm, either by treating the side effects or by switching to alternative antiretroviral drugs.
Variation in side effects

Antiretroviral drugs differ in how commonly they cause particular side effects. For example, efavirenz is the drug most associated with psychiatric symptoms, while protease inhibitors are more likely to raise levels of cholesterol and triglycerides. This should be considered when deciding which drugs to take.

Side effects vary from person to person and it is impossible to predict exactly how each individual will be affected. Some people take antiretroviral treatment for years with few problems, while others find the same drugs intolerable. Nevertheless some characteristics and pre-existing conditions (such as high blood pressure or hepatitis infection) are known to increase the risk from certain side effects. Doctors should assess these factors before advising patients on which drugs to choose.
Duration of side effects

Some side effects appear shortly after starting an antiretroviral drug and disappear within a few weeks as the body gets used to the new chemicals. This is often the case with nausea, diarrhoea and headache, for example.

Unfortunately other side effects – such as peripheral neuropathy (nerve damage) and lipodystrophy (fat redistribution) – tend to worsen over time and may never go away. Also some problems may not emerge until months or even years after treatment is started.
Preparing to start treatment

Those preparing to take antiretroviral treatment for the first time, or about to switch drugs, are well advised to learn a little about the most commonly associated side effects. This should help them deal with problems as soon as they arise.

Patients should also know how to spot the warning signs of more serious side effects that may require immediate intervention.
Reporting side effects

Because side effects are unpredictable, may occur at any time, and can be very serious, it is essential that all symptoms be reported during appointments with a doctor. Severe or unexpected events should be reported immediately.

Keeping a side effects diary is a good way to keep track of when symptoms occur, how often and how severely. If side effects are affecting quality of life or treatment adherence then this too should be reported.
Identifying the cause

Most side effects are not uniquely associated with a particular drug, and sometimes it can be difficult to identify the cause. HIV itself is capable of producing many of the symptoms that also occur as drug side effects. Other possible causes include opportunistic infections, stress, diet, and non-HIV drugs.
Patients should make sure their doctors are aware of all drugs they are taking. This means not only pharmaceuticals but also recreational drugs and complementary and alternative therapies. It may be that a side effect is due to one of these other substances, either directly or because of an interaction with the antiretroviral medication. The more information is shared with a doctor, the better equipped they will be to help.

Older people living with HIV may experience signs of ageing that could resemble certain side effects. For example, when people get older they might be more susceptible to increased fat in the abdomen, which could look similar to the changes that are caused by lipodystrophy.
Dealing with side effects

There may be several options for dealing with a particular side effect:

Wait for things to improve – especially if in the first few weeks of treatment
Address other possible contributing factors, such as diet, smoking or exercise
Change how the drug is taken (e.g. time of day, dosage, with or without food)
Try treating the side effect
Change one or more antiretroviral drugs

Switching drugs is often an effective way to reduce or eliminate a side effect when all other approaches have failed. If the viral load is undetectable then it is usually possible to switch only one drug without affecting treatment effectiveness or future treatment options. Otherwise, the entire combination may have to be changed.

Switching drugs is not without risks. As already mentioned, it can be difficult to identify the cause of a particular set of symptoms, and it may turn out that the rejected drug or drugs weren’t to blame after all. There is also a chance that the new medication may cause even worse side effects, perhaps forcing another switch. Changing drugs repeatedly will narrow future treatment options. It is important to weigh the possible risks and benefits before deciding on this course of action.

It is never a good idea to stop treatment without first consulting a doctor, as this may cause HIV to develop drug resistance.

For information on dealing with pain directly see our AIDS and pain page.
Overview of antiretroviral drug side effects

Some of the side effects of antiretroviral drugs are described below, beginning with five of the most notable. This is not a complete list.
Diarrhoea

Diarrhoea is a common side effect of many antiretroviral drugs – especially protease inhibitors. Other possible causes include HIV, other infections and antibiotics. Sometimes an antiretroviral drug causes diarrhoea for only the first few weeks; in other cases this side effect lasts for as long as the drug is taken.
Eating bananas helps recovery from diarrhoea, a common side effect of antiretroviral treatment Bananas aid recovery from diarrhoea

The severity of diarrhoea also varies. While even occasional attacks may be inconvenient and embarrassing, persistent diarrhoea can also lead to dehydration, poor absorption of nutrients and drugs, weight loss and fatigue.

Drinking plenty of fluids and replacing electrolytes will reduce the risk of dehydration. Electrolytes – such as potassium, sodium and magnesium ions – are essential to health and are depleted by diarrhoea. Ways of replacing electrolytes include oral rehydration salts (available from pharmacies), sports rehydration drinks (such as Gatorade or Powerade, though the high sugar content may worsen diarrhoea), diluted fruit juices, soups, and homemade rehydration mixtures (8 level teaspoons of sugar and 1 level teaspoon of table salt per litre of water). Eating bananas, potatoes, fish or chicken will help to replace potassium.

Although it may not be enough to solve the problem, changing diet may reduce the severity of diarrhoea. Good advice includes:

Over-the-counter medicines such as Imodium (loperamide), Lomotil (diphenoxylate and atropine) and calcium supplements are sometimes all that is needed to control diarrhoea. If these fail then doctors can prescribe stronger treatments, which may have to be injected. Sometimes nothing works, and changing drugs may be the best
option.
Nausea and vomiting

Almost all antiretroviral drugs, as well as many other medications, can cause nausea (feeling sick) and vomiting, especially during the first few weeks of treatment. Although this side effect can reduce appetite, it is important to keep eating when possible, and to replace lost fluids and electrolytes (as with diarrhoea). The following measures may help:

Eat several small meals instead of a few large meals
Avoid spicy, greasy and rich foods; choose bland foods
Eat cold rather than hot meals
Don’t drink with a meal or soon after
Avoid alcohol, aspirin and smoking
Avoid cooking smells

Some antiretroviral drugs can be taken with food, and doing so may lessen their harmful effects. It may also be possible to alter drug dosage or frequency.

Various treatments, known as anti-emetics, are available for nausea and vomiting, some of which do not require a prescription. There is some evidence that ginger and peppermint may help against nausea.

If nausea and vomiting are severe, or occur with other symptoms such as dizziness, thirst, fever, muscle pain, diarrhoea, headache or jaundice, then this may indicate a more serious problem such as lactic acidiosis or pancreatitis. In this case medical attention should be sought as soon as possible.
Rash

Rashes often appear as a side effect of antiretroviral treatment. These may be itchy but are usually harmless and short-lived. However, severe rashes can occur with nevirapine, and more rarely with some other drugs. Any rash occurring during the first few weeks of treatment should be reported to a doctor immediately, as should any rash accompanied by fever, blistering, facial swelling or aches. A rash occurring with abacavir may indicate a very dangerous hypersensitivity reaction, as described later in this page.

Tips for coping with rashes include:

Avoiding hot showers or baths
Using milder toiletries and laundry detergents
Wearing cool fibres such as cotton, and avoiding wool
Humidifying the air
Trying moisturisers/emollients or calamine lotion

Antihistamine tablets can sooth rashes and are generally available without a prescription. However, because these may interact with antiretroviral medications, patients should check with their doctors before using them. More severe skin problems may be treated with steroids.
Lipodystrophy

Lipodystrophy involves losing or gaining body fat, often in ways that can be disfiguring and stigmatising. Three main patterns are seen:

Losing fat on the face, arms, legs and buttocks, resulting in sunken cheeks, prominent veins on the limbs, and shrunken buttocks.
Gaining fat deep within the abdomen, between the shoulder blades, or on the breasts.
A mixture of fat gain and fat loss.

Although lipodystrophy sometimes affects people with HIV who have not taken any antiretroviral drugs, it occurs more often among those receiving treatment. The condition is among the most common long-term side effects of combinations of drugs from the NRTI and protease inhibitor classes. It is particularly associated with stavudine, and to a lesser extent zidovudine. The precise causes of lipodystrophy remain unknown.
The treatments for lipodystrophy are sadly limited. Changing diet seems to make no significant difference, though resistance exercise (such as weight lifting) may improve the appearance of limbs by building muscle to compensate for lost fat. Any form of exercise will burn fat, which may make some parts of the body look better and others worse, depending on how fat has been redistributed. Aerobic exercise (such as running or swimming) tends to have more effect on the fat just below the skin than on the deep fat gained through lipodystrophy.

Doctors have tried using various medications, including human growth hormone, to treat lipodystrophy, but few have proved effective, and most have significant side effects. For people who have lost fat from the face, one option is injections of polylactic acid. This chemical (also known as New Fill or Sculptra) improves facial appearance by thickening the skin.

Switching antiretroviral treatment should stop the symptoms getting worse, but is unlikely to lead to much improvement once the condition has advanced.